She has plans for me

The more R. communicates, the bossier she gets.

Lately it is more than just having her demands met, she has ideas about what I should be doing and even wearing.  It started with her pulling my sleeves down any time I push them up.  If I put on a short sleeve shirt she will go to my closet and pull out a jacket and insist I wear it.

Now she wants me to get in my pajamas when she gets in hers.  She knows where I keep them and she is even helping me get dressed.   The cutest part is how happy she is after she “dresses me.”

Over the weekend she asked me to turn on the television.  Then she grabbed the book I was reading the day before, led me to the couch, had me sit down and handed me the book.  She tapped on the book and said read book, waiting for me to open it up.  Then she cuddled next to me to watch her movie.

R is also really interested in what I am doing lately.   All the same things I’ve been doing all along -housework, even combing my hair are suddenly incredibly fascinating to her.

My hair has been particularly frizzy the past two days because of the rain and I haven’t bothered to use any hair product.  R. keeps patting my hair down using both her hands and giving me a funny look.


Two tours down

So far we have visited two classrooms.  AutismMommyTherapist was right, I’m starting to get a better idea about what I’m looking for and also what it is I am seeing.

It is like there is one voice in my head telling me that I need to keep things as similar as possible to what she is doing now and there is this other voice telling me that this is kindergarten and it should be different.

In the chapter What Can We Expect?  From the book The Child with Special Needs by Dr. Stanley Greenspan and Serena Wieder, they write:

The best indicator of your child’s potential is the shape of his learning curve once he is in an optimal therapy program.  …. as long as that learning curve is going up your child will continue to grow…

If you think of your child’s learning as the building of a skyscraper, you can picture the emotional milestones as the building’s foundation.  They must support 80 stories – 80 years of living in the world.  They must be very strong, for if those basic skills are shaky, the entire building will be at risk.  It is far better to have a solid foundation developed late, than a shaky foundation built on schedule.

Quality of learning should never be sacrificed to the desire to move ahead.  If building a solid foundation and strengthening the milestones means temporarily taking more time, we encourage that, because without that foundation your child will never be able competently to move on to more complex areas.

Both of the voices in my head have a point.  We do need to find a class that will provide a similar environment to what she is used to, but at the same time offering new opportunities for learning and experiences.

By the end of the month we will have visited 3 SI (Severely Impaired) and 3 MM (Mild Moderate) special day classrooms.  Between the two categories there are more than twenty schools in the city.  There just is not enough time before our placement IEP to see all of them.  I think that we will have enough information to make a decision on service type.

In speaking to the teachers it seems that each one has an idea of what type of student belongs in their class.  It would be nice if they printed a directory of that information, but technically I believe that is against the law.  Special education is a service, not a place.

The teacher of the MM class we saw told us that she felt a couple of her students were misplaced in her classroom.  I feel badly for those children and their parents.

I’m not going to be able to change that before R. gets to kindergarten so I will try to use it to my advantage.  The teachers seem willing to speak to R.’s teacher and one offered to have R. come and sit in on a class.  I don’t know how that would work out considering it is a different school, but it is something to think about.

Reference: The Child with Special Needs by Stanley Greenspan, MD and Serena Wieder, Phd (Perseus Publishing, 1998)  Pgs. 433, 436,

Visiting at recess

We visited R. at school during recess.  She was sitting with some other students and an aide playing with a dollhouse when we arrived.

She was very happy to see us and made sure we remained close by the entire time.   She sat on a tricycle and moved around with her feet.   E. tried to get her to pedal but she wasn’t interested.

The teacher set up an activity with shaving creme and paint brushes, she played at that for a short time with some other kids from the general ed preschool class.

Then the teacher set up a water table.   I actually got R. to wear the smock with no effort at all on my part.  I just told her she had to wear it to play with the water and pulled it over her head.

It was a very hot day and the teacher handed out spray bottles of water and asked the kids to spray her.   R. had a good time spraying herself, and it was fun to watch her giggle about it.

After a little more tricycle riding and a couple of trips down the slide she went back to the dollhouse and played with a couple of dolls and some furniture.   Girls from the general ed preschool joined her and the teacher tried to engage them, but everyone was too into their own thing.   R. stayed and played next to them for a few minutes and then moved to the other side of the dollhouse.  It looked like she was kind of watching the other girls through the windows while she played on her own.  I never saw a doll house on a playground before, but it sure seems like a good idea.

When it was time to line up to go in for lunch R. grabbed my hand and wanted me to go with her.   She frowned, but did not cry when we left.  We waited until they were walking back inside rather than walking away from her while she was still on the playground.

We got to meet the new students and they all seem so young.  It feels like so long ago that R. was that little, but really it wasn’t.

Revisiting the ipad behavior plan

My behavior plan for the ipad has been working.

Issue 1: She wants all ipad all the time

The ipad is still a favorite activity.  She doesn’t have much free time with school and therapy during the week so it hasn’t been much of a problem then.   When a vacation or a few days off start she can get obsessed with it.  But she will actually get tired of it, she reaches her own saturation point and walks away to do something else.

I think that having certain times of the day that she has access to it helps.   I’ve learned to be flexible and it seems to help her be flexible about it.  I did not want her to use the ipad when she gets home from school because she has her ABA session starting within the hour.   She really wanted to use it so I tried.  She does not complain when it is time to put it away, so it works out fine.

It seems like she’s more accepting of other times when I want to put it away.   But it still helps to have something else to do planned, even just a transition to listening to music.  I plug the ipad into speakers which are high on a shelf she can not reach.

I’m also looking at some of the “ipad time” as time we are doing something together.  She will sit on my lap or with me at the table and do puzzles or whatever.

Issue 2:  She wants to pick her own apps and they are usually a video or something stimmy

I’ve been trying to be more hands off and let her do what she wants.  I posted about her interesting video choices recently.

On the weekends or days off if she is spending a lot of time on the ipad I’ll get involved and choose some more educational apps that aren’t her first choice.

Teaching her to say all done when she does not want to do something on the ipad has worked really well.  If I run an app she doesn’t want to do, she’ll yell all done, and she is generalizing that phrase to other situations.   I’ll insist that she do my chosen app for a short period of time and I’ll define it- 3 more times or whatever.  Then I let her do what she wants.

She also has a tendency to find any adult app on the ipad.  No not those.  But she was quite obsessed with E’s Contract Killer game and a few others.  The only answer is to delete them.  She seems to want to play with guns and watch cartoons fight, she thinks it is hilarious.  If anyone knows any more child appropriate games sort of like that please let me know.

Issue 3: She wants to use my finger instead of her own to operate the ipad. She has a short attention span at times.

This issue is resolved with familiar apps and features of the ipad.  She can open apps, folders with apps, change screens, she knows how to wake it up when it goes to sleep.

I think the key is self confidence.  She needs to feel that she can do whatever is expected of her, once she can do it she will spend quite a while at it.

This bring me to a new issue.

Issue 4.  She doesn’t like to try new apps.

I basically resolve this with trial and error.   I’m being more selective about what apps I show her, rather than offering her every free app I find.   I kind of know what she tends to like.

I’ll open up the new app when I hand her the ipad and try to get her to see what it does for a couple of seconds.   I try not to do this too often.  It seems like if she finds the app herself she gets more interested in it.  Especially if I don’t have to show her how to use it.

When she walks away from the ipad I will play with one of her less chosen apps.  Sometimes this gets her interested enough to want to learn how.

She is actually starting to get manipulative about it.  She mostly asks me to help her learn new apps when I am trying to cook dinner.   So dinner has been getting later this week.

Other issues

R. moves around all the app icons.  She files them into folders of her choosing.   Every time I get the apps all organized she comes along and puts them how she wants them.  I can’t make sense of her order, but I’m learning to live with it.    Reducing the number of total apps helps.

She also turns the volume up to the max.   She doesn’t even put her fingers in her ears.  I wonder if she is giving herself some kind of noise therapy.

I do put a stop to it, and turn down the volume.   She is starting to turn it down herself,  sometimes on request.   I wish that there was some way to limit the max volume.

Kindergarten Obsession – Questions for school tours

I’ve been compiling questions, and I have way too many.  This list does not even include things like details about the teacher and classroom, the parking situation and probably a dozen other things.  But it is a start.

  1. What are the procedures for drop off and pick up?
  2. What time does yard supervision begin? End?
  3. What is the school’s philosophy and practice regarding discipline?
  4. How many recesses do kindergarteners get, and how for how long?
  5. Are SDC students included for recess?
  6. If so, how are integrated play opportunities facilitated on the playground?
  7. How long is lunch? Is there also snack time?
  8. Are SDC students included for lunch in the cafeteria?
  9. How does the school handle supervision during lunch and recess?
  10. Does the school have assemblies? How often?
  11. What kind of school-wide activities are there?  (including music, PE, etc)
  12. What are the before- and after-school childcare options?
  13. Do SDC students have the opportunity to participate in the above?
  14. Where do pull-outs for speech therapy and OT take place in the school?  Do they have an office or dedicated area for working with students?
  15. How often do fire drills and earthquake drills take place?  How are SDC students prepared?
  16. How does this school/class encourage and monitor students’ progress toward meeting grade-level standards?  How does this apply to SDC students?
  17. What standard testing is done?
  18. Is there regular reverse mainstreaming scheduled in the classroom?
  19. Do they do disability awareness lessons for students without disabilities?

Thanks to all my awesome mentors from Support for Families and this great article with questions from Bonnie Sayers.

Getting ready for the first tour

We have our first tour this week of a K-2 SDC (special day class)

The process of touring is kind of slow going.  We have to take a general tour and an additional tour of the K-2 SDC for almost every school.   The general tours are scheduled in advance, but for the SDC tours I have to get the teachers to call me back.    Many of the schools won’t schedule anything until October.

I realize that October is just a few days away.  But it just feels like the window is closing in so quickly.

Even with the appointment we have this week, they are only giving us half an hour to observe the class.  I get that they can’t let us hang around all day (though I would like to ). But it sure doesn’t seem like much time.

The teacher also told me that if I had any questions I should call him after class.  So in other words, sit down and shut up for our 30 minutes.  I do understand that the teacher can’t give us a lot of attention during class.  Maybe if the tour was longer it could spill over into some of the free time and then he could answer a question or two.

Part of me wishes that I could take R. to see the classrooms and schools.  Of course that would be difficult on so many levels.  And it seems that even the general ed students are not welcome at the tours, so there is no precedence for it.

September Meeting

We had our monthly ABA meeting at the school with the teacher this month.   We set the date for the IEP meeting that will determine the type of kindergarten placement for the beginning of November.   That seems so close.

I was hoping to have an IEP meeting this month to update some goals.  But since we have so many meetings and IEPs, the teacher and I agreed that I would email her the goals we discussed and she would update it.

Most of the goals I want updated are simple enough.  R. has mastered recognition of the alphabet, numbers 1-10 and the prewriting goals.   She is actually writing some letters in class.   I asked for more writing goals – tracing more complicated shapes, copying shapes and writing the alphabet and her name.

I also asked to increase the numbers to 20.  I know she knows them, I wonder if I should have gone up to 30.

R. is talking more in class, asking for things and labeling all sorts of items.  We discussed that she does not always make sure she has someone’s attention before asking for something and then gets frustrated.  The teacher had been working on getting her to tap her on the shoulder and say her name before requesting.

She has a goal about responding to someone else by making eye contact and orienting her body towards the speaker.  So I suggested that we make an actual goal that she would get someone’s attention before requesting something.

R. has also been refusing to wear a smock for water play and painting.  She used to wear one, but for some reason will not do so.  I asked for a goal for wearing a smock during these activities and then to put it on herself.  It seems like a weird goal, but I think that it will help her in a few ways if she would agree to wear it.

More fun with the light table

I accept autism, and I have expectations

I’ve been thinking about what acceptance really means to me.

I have posted about acceptance before:
Giving up on greener grass
On acceptance
A letter to NT parents

I accept that my daughter has an autism spectrum disorder.  She will be impacted by autism her entire life.

What does it really mean to me to accept my daughter’s autism?
It means that I love her unconditionally.
It means that I don’t believe she will be cured or recovered.    (Not to be confused with progress.  I do believe she will progress)

Just because I accept autism, does not mean that I have given up on having expectations for my daughter.

As part of a parent training I took with a local support organization we heard a panel of speakers talk about various aspects of disability and discrimination.  Joana Fraguli said to us that every single one of our children, regardless of disability could go to college.

At first I kind of laughed to myself.  It is hard to think about college when a trip to the library is still unpredictable.   But then I realized that Joanna is correct.   College is not a topic I’m going to dwell on right now, but having autism doesn’t rule that out.

R. has a significant language delay that is part of her autism.   I accept that communication is a challenge for her.  Of course I hope that she will communicate more and more as she gets older.   I expect her to communicate at the best of her abilities (which are changing).  I expect that I and anyone working with her will prompt her to do so.

R. has some sensory seeking behaviors that are part of her autism.  I accept that she needs the input from whatever activity she is seeking.   But I expect her to choose activities that are safe and reasonably appropriate.    If she does not, I will redirect her.  When I catch her chewing on her sleeves or a paper towel roll, I’ll provide her with something to chew – food or a chewy tube.   When she wants to jump on the couch which is dangerously close to the window I’ll redirect her to her trampoline or even a bed.

What about acceptance in the community?

Again, I think it comes down to expectations.   At first glance, R. does not have an obvious disability.  The general public expects her to act like all the other four year olds.

I accept her challenges, and I provide her with the supports she needs to go out in public – taking her security items, sitting in the stroller if she wants.   When she puts her fingers in her ears I just ignore it (as long as she is happy) I don’t draw attention to it.

I expect the general public to leave her the heck alone when it comes to these things.  As long as she is not harming anyone, we have every right to go to public places, even if we look a little odd.   I expect that when people in the general population have more experiences with people who present differently that they will come to some degree of acceptance.

There was a lady in the elevator at Safeway and she was totally distraught that R. had her fingers in her ears.  This lady acted like R. had sprouted antlers.  Maybe the next time that lady sees a child with fingers in their ears she will not be so shocked.

I expect R. to behave when we go out.  That means I expect she will not cry and scream, throw things or deliberately misbehave.   If we go to a restaurant (so rare) or a party or something and R. is unhappy, we will leave.    But we will try again.

I think that the general public does not really understand autism, and it is only through personal experience that people can come to some level of acceptance of people with disabilities or even people who are different.

R.’s teacher told me about a few general ed elementary girls who walked by the class and asked if there were students with autism.  The teacher said yes and the girls said aww that is so sad.   The teacher actually got angry and said, it is not sad, these kids are not sad or unhappy.  Look at them, they are all having fun!

Personally I think it is kind of sad that these girls are so unaware of other students at their school.   But that is probably a whole different topic.

We went to the playground and there was a boy probably 8 or older there with his Mom and baby brother.  He seemed very bored, talking to all of us looking for attention.  He was playing with a remote control vehicle, and it got R.’s attention.  She said wow and gave him the sense she was interested so he started performing for her.   She followed him around for a while, and when she stopped he actually came back to her with the vehicle trying to get her attention.

He did not even acknowledge her lack of language. He was not phased when she ignored his attempt to hand her the controls.  What an incredibly accepting kid!  How did he get that way?  Of course I could not ask his mother.    But meeting that boy gives me great hope.

I accept autism, and I genuinely hope that the rest of the world will come to do so also.  But I think that the general public has to learn to expect autism, before they will be able to accept it.

Kindergarten Obsession – it begins

I’m going to be writing about kindergarten more over the next few months.

Here in San Francisco, the process is fairly complicated.  We have to select up to seven schools and then one is chosen (hopefully) from the list.  The IEP team chooses a service type and that narrows the available options.

I will start touring schools next month, and then I hope I will get a better idea of what type of class would be a good fit for R.   We have to make a decision by the end of January.

I’ve been trying to read blogs from families with children who are going through or have already experienced the kindergarten transition.

Autism and Oughtisms writes about her reflections on his first term at a special needs school. 

She pointed out to me that R., being moderately affected by autism could potentially fit into any class.   The labels sometimes seem meaningless in these situations.

Autism Wonderland has been documenting her journey with her child with autism who is starting kindergarten.   She lives in a big city, and their process seems as convoluted as ours here.

Here’s a post called when autism and kindergarten meet